Newly diagnosed : I was diagnosed middle of May and... - NRAS

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Newly diagnosed

mmb50 profile image
18 Replies

I was diagnosed middle of May and been on methotrexate since then...this is 6th but no relief from pain. Have steroid injection in my knee but only lasted a week. Have had 2 intramuscular injections without success. Does anyone know if oral steroid more effective?

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mmb50
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18 Replies
Shazz10 profile image
Shazz10

The only thing that relieved my pain was oral steroid 40mg... prednisolone. It worked within half an hour.it felt miraculous. I was then put on mtx and am in week 10 I think...tablets fist then injections 15mg. I have now managed to taper down to 2.5 mg of pred and pain is retuning a bit but nowhere near like before. It can take 3 months for mtx to work I'm told...it must be working a bit for me as there is no way 2.5mg of steroids was do able for me before I had got to 10mg and had to go back up to 15mg in week 4 or 5 as the pain retuned. Whilst I can't wait to get off pred I have to say I would have been a lot worse without it. It enabled me to get mobile after weeks of needing help to even get out of a chair. I was never offered steroid injections so can't compare but oral steroids were definitely a huge help to me

Sharon 🌸

mmb50 profile image
mmb50 in reply to Shazz10

Thanks Sharon I'm encouraged by your experience and really would love pain relief even for 2 weeks. I've been in pain over 7 months and crp is still high at 63 so really hoping Rheumatologist will agree to prescribe oral steroids but up till now she hasn't been keen.

AgedCrone profile image
AgedCrone in reply to mmb50

You have a caring rheumatologist trying to keep you off Prednisiolone.

I think it's the drug from hell! I thought I was losing my mind after only a couple of days on it ! I refuse to take it ever again.

You will read on here how difficult it is to come off it.

Have you asked you Rheumatolost to consider a Depomedrine injection? I find that lasts around 10/12 weeks.

Others here say it has no effect.....but you could be one if the Lucky people it works for!

mmb50 profile image
mmb50 in reply to AgedCrone

Thanks for reply. Have had 2 injections intramuscular and neither worked. Waiting to hear if Rheumatologist will agree to tablets and hope I'm one of the lucky ones

helixhelix profile image
helixhelix

We're all different! I loathe oral steroids as made me go totally loopy. And that plus the long term effects means I won't touch them now as don't want to get dependent. But the injections worked a dream.... Recently had steroids via a drip which worked remarkably quickly - I was nearly skipping by the time I got to the car park, but sadly only lasted a couple of weeks.

If you have a lot of inflammation then it's a lot for any type of steroid to conquer. But hopefully you are nearly at the turning point. My breakthrough moment with MTX was week nine.

mmb50 profile image
mmb50 in reply to helixhelix

As mentioned in other reply I've had prednisolone for PMR with no side effects. My crp is 63 suggesting inflammation present!! I'd be happy for 2 weeks pain free🤗

nomoreheels profile image
nomoreheels

Hiya & welcome. I've been on oral steroids for 4 years, though at long last next month I'll start tapering them. I wouldn't necessarily rush to ask for steroids, if I explain why. Whilst they can be little miracle tablets in the right situation they also come with unwanted side effects. They can cause thinning of the bones (osteoporosis), thinning of the skin (dang those wrinkles!) & adrenal insufficiency, though this is usually only obvious when tapering after lengthy courses not short courses. As it is you're half way to your MTX reaching it's potential so you should be noticing subtle changes in your RD soon anyhow. Yes, they can be helpful, I was prescribed a short course when diagnosed whilst waiting for my DMARD to work but generally it seems here in the UK a general steroid injection is preferred. Like you I don't respond well to injections, only once has one helped & that was into my palm. Has your Rheumy not talked about NSAIDs to you? These also work on inflammation, as well as not being controlled yet it's inflammation that can be the cause of pain. Or you could see your GP see if he/she thinks an NSAID may be necessary.

I hope your MTX helps, it can be a very good DMARD.

mmb50 profile image
mmb50

Thanks for your reply. I had oral steroids 4years ago for PMR which really helped with no noticeable side effects. I've been on Naproxen Tramadol topped up with paracetamol for 7 months but still in a lot of pain. I would at least like to try them but rheumatologist doesn't seem keen

Gnarli profile image
Gnarli

I've had short courses of oral steroids 2 or 3 times so far and they work within the hour to reduce pain. While I was taking the first course it was like I didn't have RA at all! Amazing result and I was feeling like a fraud. But there are side effects, as with most things. My face has gone puffy, skin and hair are very dry and I cry - a lot - for nothing. The nasty temper may also be part of it. As always it seems to be pluses and minuses. I've never had an injection of steroids so couldn't comment. Hugs

Jan

mmb50 profile image
mmb50 in reply to Gnarli

Thanks for reply!! I'm waiting on rheumy nurse to get back to me after she's spoken to rheumatologist so really hoping she says YES!!! I only want them short term till methotrexate kicks in. Hope I'm not one of those for whom methotrexate doesn't work. !!!!!

Gnarli profile image
Gnarli in reply to mmb50

Hope for the best and prepare for the worst. Mtx suits the majority of people but you know how it is, those it doesn't suit will post more. Wishing you better

J

mmb50 profile image
mmb50 in reply to Gnarli

Thanks 🙏

HJMorgan profile image
HJMorgan

Hi, I see consultant tomorrow - my first appointment prior to tests etc. How have you been on Methotrexate? I have heard so many different stories.

mmb50 profile image
mmb50 in reply to HJMorgan

So far I've been fine but only 7 weeks in!! Hopefully you may not need methotrexate and may get anti-inflammatory. Wish you well tomorrow 👍

HJMorgan profile image
HJMorgan in reply to mmb50

Thank you, good luck, hope it does the trick.

HJMorgan profile image
HJMorgan

Ok, it's me again :D I first noticed swollen, painful small finger in March. Since then pains (tender) in shoulders & elbows. Hot hands (at times) & strange slight discomfort middle of hand. Knees painful but have been for years. No morning stiffness. Really don't want to go on toxic meds unless necessary & currently I don't need painkillers. See consultant tomorrow so we will see. Any thoughts anyone? X

Hi I was diagnosed a year ago on methotrexate once a week no bad side effects. Was on Prednisone for a while but my Rhuematologist doesn't like giving that so she has put me on Plaquenil which is definitely stopping the flare ups do far. Only the last few months I have been having knee pain particularly when I'm trying to sleep

mmb50 profile image
mmb50

Thanks for reply. I would only want prednisolone for few weeks till methotrexate kicks in. Maybe then would consider Plaquenil if needed. I hoping to go on holiday on Friday so desperate for some quick relief. Injections haven't worked so this is last resort 🙏

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